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Everything posted by gertie

  1. Thanks for your reply. I think I understand how you feel. My grown son & family came in for for couple of hours on Mothers day & altho I enjoyed them I was so exhausted by the time they left I was physically ill . No one seems to understand that kind of fatigue especially my DH. Sometimes I think I can go out for awhile but before I actually get there I have to come back home. That is especially embarrassing for me, it makes me look & feel like a weak person. I'm hoping you get where you can take those college courses. Don't give up!
  2. I probably shouldn't feel this way but I just don't have a life. I mean I never seem to get to do anything I really want to do. My DH plans every day. He tells me the day before that tomorrow he will take me shopping. Well, it's here & I have a migraine & don't feel lifting my head much less riding & shopping. That has ruined his day. A few days ago I had a little energy & thought I would like do something, he already had plans that day, so I stayed home. I feel I have so many health problems now I shouldn't try going for long distances by myself. If I don't start going alone I'm never going to get to do anything. I can't expect DH to plan his life around how I feel. Any suggestions how to cope with this? Thanks.
  3. Thanks Gemma, I have given up trying to take antihistamines. The partial seizures they trigger are worse than the other symptoms. I will speak to my doctor about a slip to use for blood test when having a flare. There is usually not a day that goes by I don't have a flare from something, that is unless I am having a tryptase test that day. LOL!
  4. Chaos, I've tried taking antihistamines but I had partial seizure from them so I've given up. When the tryptase test comes back normal my internist will just assume everything is ok & that will be the end of that. I wish there was some way you could get an accurate test without a bad reaction. I almost laugh when I think that I felt the best I have felt in a few weeks & now that the test is over I will be reactive to everything again.
  5. Thanks for your replies. I felt I should at least try to find out if I have MCAD. My internist was willing to do the test but I don't think he had ever heard of it until I mentioned it. He had to look it up before knowing what test to have done. I'm sure it was a waste of my time & money. That is as far as I will ever get in finding out if I might have it. When I was going to the hospital ER with reactions to meds & foods was years before I ever heard of MCAD & I'm sad to say things haven't changed much here.
  6. I have suspected for a long time I might have MCAD since I am allergic to everything. I had an appointment to have blood drawn today for a serum tryptase test. I usually react to everything & everyone I come in contact with + everything I eat. I found it strange that today nothing bothered me. I didn't itch, burn, freeze, throat & mouth burn, didn't feel faint. I was almost tempted to take an aspirin so I would be having an allergic reaction to something when I had the test done. I know that's silly, but I'm sure the test will be normal because I felt fine other than a little balance problem. Did any of your tests come back normal even tho you have MCAD? Thanks.
  7. I have a lot of visual disturbance sometimes from Meniere's, other times from Dysautonomia & migraines. It's impossible to drive when the road seems to be undulating & swaying or your vision is fuzzy. Nothing has ever been found wrong during vision checkups.
  8. Mine has been caused by Meniere's disease.
  9. I've been off probiotic for 2 days now & just beginning to feel a little better. Thanks everybody!
  10. Thanks everyone. This probiotic is the only one I could find that only used rice starch as a filler. I will not take it for a few days & see how I feel. It really gets disgusting not being able to tolerate anything.
  11. Most of my allergy symptoms involve my neurological system in some way. I guess that's why I hesitate taking new things. I finally found a probiotic (allergen free) & thought that would be good for my IBS. I've been taking a small amount of this for a few days & have had no bloating or anything I've heard that is common when starting probiotics. Instead, I've been having some strange problems with my vision & I've been lethargic & depressed the last couple of days. I slept for 3 hours this afternoon & still didn't want to get up which is not me at all. Is it possible a probiotic would cause this. I have had strange symptoms like this from antigen injections for mold before & had to stop taking them. Your comments appreciated.
  12. I have tried them both & I couldn't tell any difference. However, a low histamine diet does seem to help.
  13. Has anyone here had these 2 blood test done? I sure I have a histamine intolerance & would like to have the test. If you have, do you remember the cost of testing? thanks.
  14. Thanks for all your replies. It took me a long time deciding which probiotic to try. I chose strains that degrade histamine or that are neutral. I took a small amount today & so far ok. I do eat sauerkraut occ altho it is not supposed to be good for those of us with hypothyroid. looneymom, I have allergen free Pure Encapsulations. The only additive is rice starch & it is vegetarian capsule but I take it out of capsule & sprinkle on food. Katybug, I haven't been tested for mcas but I did have a bad reaction to histamine during allergy testing.
  15. Thanks, I'm going to keep trying small amounts of it.
  16. Are probiotics usually ok for us? Sometimes I can eat yogurt without a problem & at other times it makes my throat & tongue burn. It may be because it is a high histamine food. I am trying a small dose of probiotic but I seem to be getting more mouth/tongue burning from it also. I hate to be so pessimistic but I'm always afraid to try anything new. Thanks for your reply.
  17. It might be worth you trying a combo of probiotics that are histamine degrading. When I start something new like a probiotics, I sprinkle about 1/4 of a capsule on food to begin with, & if that doesn't bother me I gradually up the dose. thanks for your reply.
  18. Does anyone know if this probiotic strain is histamine producing or degrading? I have read a list of probiotics to avoid & the ones that are supposed to be good but I can't find this strain on the list. I don't want to take something that is going to make POTS symptoms worse. I know some of you have MCAD & thought you might know. Thanks.
  19. The only ones I can find are from porcine, haven't been able to find vegetarian. I seem to react negatively to everything. thanks for reply.
  20. Does anyone here take these supplements? If so, did you have any side effects. I'm told there isn't any known side effects but I'm not believing that. Thanks.
  21. I know what you're going through. It's the same with my husband & family. I think (speaking of my family) they just don't care. I've learned to "suffer in silence". If they ask how I'm feeling & I start to respond with the truth I can't see a blank look on their face & I simply say "I'm fine". Hope things get better for you.
  22. Have you had your adrenals checked? When I was younger I was into weight lifting but as this illness progressed I had to stop. The more I tried to exercise the weaker I got. I also found out I had adrenal failure.
  23. Thanks for responding. It's good to know I'm not alone in this. Every job I ever had was with a telephone in my ear. Cell phones are the worst but in my experience they are all bad for the brain.
  24. Does talking on the phone for any length of time make you nervous? I have some people that call & will talk for an hour or longer and me saying occ "I've got to go" for some reason or other. They just keep talking. Finally I thank them for calling but say I've must go & take care of something. By that time I'm shaking all over, have headache & ready to scream. Maybe I need socializing. I do prefer being by myself because of allergies & sensitivities etc. I feel better when things are calm & quiet. Does anyone experience this or is it just me? thanks.
  25. I do better with distilled water. I use it to make hot teas or just hot water & lemon.
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